Providing information and supportive care, and data collection to improve care

1.1 General principles

1.1.1

Commissioners and healthcare professionals involved in the care of patients with advanced breast cancer should provide assessment and discussion of patients' needs for physical, psychological, social, spiritual and financial support to be undertaken at key points (such as diagnosis; at commencement, during, and at the end of treatment; at relapse and when death is approaching). [2009, amended 2026]

1.1.2

Ensure all people with breast cancer have a named clinical nurse specialist, or other specialist key worker with equivalent skills, to support them throughout the whole care pathway. [2026]

Why the committee made the 2026 recommendations

The cancer service guidance that underpinned the version of the current recommendation 1.1.1 that appeared in previous releases of this guideline has been retired, but the committee felt that the points were still valid and opted to retain the recommendation with minor updates. They also noted that a related recommendation about having a clinical nurse specialist from the NICE guideline on early and locally advanced breast cancer also applies to people with advanced breast cancer, so agreed it should be reproduced here with minor edits to reflect differences in management pathways between the stages of breast cancer.

The committee recognised the increased risk of depression in people with advanced breast cancer and so included a cross reference to the NICE guideline on depression in adults with a chronic physical health problem.

Full details of the evidence and the committee's discussion are in evidence review B: FDG PET-CT and contrast-enhanced CT for diagnosing and monitoring distant metastases.

How the recommendations might affect practice

The recommendations reflect current good practice, but may help standardise it where localised variations occur.

1.2 Research, audit and quality improvement

1.2.1

Throughout the treatment pathway, discuss opportunities for people with advanced breast cancer to be involved in research, at their treatment centre or others, including the benefits and risks of participating in research. [2026]

1.2.2

Commissioners should ensure that:

  • people with advanced breast cancer are accurately coded in the digital records to support audit, research and quality improvement.

  • data is collected to support national audits. [2026]

Why the committee made these recommendations

The committee agreed that it is important that people with advanced breast cancer have opportunities to be involved in research to help improve the evidence base underlying which treatments are clinically effective. These opportunities should be made available whenever appropriate and not only after standard treatment lines are exhausted. The opportunities should not be limited to their centre, but taking part in research in other centres may involve travelling further or more frequently, and practical issues such as this should be discussed with the person. There may also be non-clinical studies, for example looking at their views and experiences of treatment.

The committee noted that advanced breast cancer is not coded consistently in current practice, and that this can make it hard to estimate incidence and prevalence. They agreed that accurately recording which people have advanced disease and the treatments they receive will help with forward planning of resource allocations, and support research and improvements in the quality of care. The committee were aware of the National Audit of Metastatic Breast Cancer (NAoMe), and agreed that it is important to support the data collection for this and future national audits to improve practice. They made a consensus recommendation to address this.

Full details of the evidence and the committee's discussion are in evidence review A: platinum-containing chemotherapy regimens and evidence review B: FDG PET-CT and contrast-enhanced CT for diagnosing and monitoring distant metastases.

How the recommendations might affect practice

The recommendation on involving people with breast cancer in research reflects current good practice, but may help standardise it where localised variations occur.

There is variation in how advanced breast cancer is currently coded in digital records and this recommendation may help to standardise practice. The collection of data to support national audits reflects current good practice, but this recommendation may help to standardise practice where coding varies and audit data is not currently reliably collected.